I worry about my daughter and her vitiligo – all the time. So as I sat at the 2018 World Vitiligo Day conference this past June, I remember wanting to pat myself on the back. I was already doing several things that the experts were recommending for children with vitiligo. And yet, I didn’t feel like a “number one” mom – and I wondered why.
As it turns out, I’m not alone in struggling mentally and emotionally with my child’s vitiligo. Research shows that parents of children with vitiligo need as much care and attention as their children – and here’s why.
Studies show that parents of children with vitiligo struggle too
According to the clinical report Hidden Victims of Childhood Vitiligo: Impacts on Parents’ Mental Health and Quality of Life:
“Vitiligo often effects patients mental state due to cosmetic problems, social pressures and a wide range of severe psychological problems such as fear, anxiety, depression and suicidal thoughts. These problems stated above are not only confined to the vitiligo patient but may also affect those close to the patient, e.g. family members.”
A study was conducted involving 50 families of children with vitiligo and 50 families of children without vitiligo to assess quality of life. The study was assessed in two ways: the self-rated health measurement scale (SRHMS) and the dermatitis family impact questionnaire (DFI). Results showed that all totals for the SRHMS assessment scores were significantly reduced in parents of children with vitiligo as compared to parents of healthy children. In addition, mothers had significantly lower scores than fathers for all dimensions of mental health. The DFI results showed similar results indicating that parents of children with vitiligo carry significant psychological burden and their quality of life is lessened. Parents of children with vitiligo need as much care and attention as their affected children.
Moving forward with vitiligo
My daughter is smart, creative and beautiful in every way – an innocent nine-year-old who doesn’t care about clothes, hair styles or brand names. She doesn’t care about what she looks like or what her friends look like – she just wants to have fun. I remember that age and feeling the same way. And yet I also remember my pre-teen years, going through changes both inside and out. I was insecure about almost everything at that age – and I didn’t have vitiligo.
As the parenting years to my fun-loving nine-year-old quickly come to an end, I am not only concerned about how the mental side of vitiligo will affect her but also what it will do to me. I can’t seem to do enough. I can’t make my child see what I see when I look at her. I can’t make the world accept her or notice her talents instead of her vitiligo. I can’t fully take away her fears – or my own concerns.
As I move forward, I will continue to seek out friends who are willing to listen to me talk openly about my child and my worries. I’ll continue to talk to my family and others in my support system. I’ll try to worry only about the things I can control and seek out help when we need it. I’ll advocate for her and parents like me and remember that I am not alone as a parent of a child with vitiligo – because I need that reminder too.
Do you feel like you struggle as the parent of a child with vitiligo? How do you cope?
Julie Hartley is a proud mom to Leah who has vitiligo. Leah loves animals, art and playing with friends. Julie lives in Northern Kentucky with her husband Chad, son Chase and Leah.